Pages

Sunday, May 1, 2011

Liam's Story

Liam is my three year old son, who is living with Ulcerative Colitis. This story is about everything he has gone through in just three short years.

Liam was born 6 1/2 weeks early. He beat all the odds and surprised everyone by being a healthy 6 pound 1 oz baby boy. He spent very little time in the NICU and got to come home with me three days after his birth. Everything was great until he got his first cold at 8 weeks old and ended up on his first round of antibiotics for a sinus infection. The youngest by far his pediatrician had ever treated. Little did we know at the time this would be the norm for Liam.

He was colic for a good 10 months screaming for hours on end, projectile vomiting due to acid reflux and was constipated all the time. We had him on medication for the reflux as well as the constipation. I changed my diet and nothing seemed to work. One day I went to my chiropractor for lower back pain. She was asking about Liam and I told her how he was doing. She asked me if she could check him out? After examining his spine she said he was out of alignment in two places. I was a little nervous having my 10 month old adjusted, but I trusted her very much. After she adjusted him, he began to giggle. I could not believe it, he was actually happy. He had the most normal bowel movement we had ever seen that night and slept. We were thrilled with the results. We took him two more times and the constipation stopped. Even though the constipation was over, he was still fussy.

By his first birthday a friend suggested taking him off all dairy and seeing if his crying and upset tummy's would stop. To this day I am so grateful for her suggestion. Liam was lactose intolerant and in just two days he turned a corner. Liam was finally the happy 1 year old he was suppose to be.

We were thrilled to have discovered the lactose problem, but we still had not gotten a handle on him getting sick so often. By the time Liam was 15 months old he had been on 22 antibiotics. Yes I said 22. My mama gut just kept thinking that something else was wrong. Finally we ran tests and he was diagnosed with a low immune system....DUH! I kept him isolated as much as I could for a mom who also had a 4 year old daughter to entertain. I took him off tap water, started washing him with sulfate free body wash, gave him garlic and probiotics everyday. I started putting flax seed in his food and hiding the veggies he would not eat in his meals. I wanted to build his immune system up as much as I could. We stopped taking Liam to stores and homes with lots of kids. Everyone had to wash their hands before handling him and if they were sick they had to stay away from him. He still got sick, but it was not as bad as the year prior. At his 2 1/2 year check up he got a clean bill of health. We were all so very excited to be able to do things as a family and not be so isolated.

Things were going great. Liam was antibiotic free for 16 weeks, the longest he had ever gone. It had been three months since he was given a clean bill of health. Things were starting to look up until be got back from a family camping trip in July. Liam started having diarrhea. At first I thought it was from all the summer fruit he was eating. I took him off all fruit and there was no change. He started looking very pale and was eliminating foods. I took him to his pediatrician who decided to treat him for Giardia. He immediately started feeling better. Unfortunately as soon as he finished the antibiotic, the diarrhea came back. Three doctors researched if Giardia could come back and they said that the antibiotic does not kill the eggs, so the eggs may have hatched. This time Liam was put on the antibiotic for two weeks. Well same thing happened. After two unsuccessful treatments and Liam losing 7 pounds, we were off to a specialist. Liam had a colonoscopy, endoscopy, many biopsy's and blood work done the day after the appointment. The doctor called three days later with a diagnosis of Ulcerative Colitis.

Once we got the diagnosis his doctor put him immediately on 20 mg of prednisone. For three months we gave him this drug. He had extreme bouts of roid rage, which was difficult on him as well as us. He became extremely sensitive to touch, and clothing textures. He would have lots of energy, which was uncontrollable at times. It was very hard to watch and not be able to take it away. He started to grow dark hair down the spine of his back. Eventually Liam started to eat again, have some normal bowel movements and gain weight. This drug that turned him into a different kid, was actually working.

Since the diagnosis I have spent endless hours researching this autoimmune disease, which is incurable. The one thing I keep noticing is there is very little information about children (especially toddlers) living with UC, and very little about preventive measures. Every story I read is about what drug or drugs the doctors have put each person on and what side effects they are experiencing. After reading many similar stories and watching my son deal with the affects of prednisone, I decided I was going to research alternative ways to help Liam. This is not my disease, its his and he is going to have to learn how to manage it as he gets older. But, for now I can do everything in my power to help him.

My husband and I kept thinking diet had to be a key component. Liam was eliminating certain foods on his own. I started listening to his requests, even if it was the same food over and over again. I swear there were days, when he only ate instant oatmeal and nitrate free hot dogs. I tried asking his doctors about what foods I could give him. At first they were no help, and just kept saying" give him the drug, its working". After we weaned him off the prednisone, we met with his specialist for a follow up. I told her that I took Liam off all dairy, high fiber foods, raw veggies, and beans. She was impressed that I did that on my own. She suggested also taking him off sugar. Along with that I decided to only eat organic food and eliminate gluten, nitrates, corn products, and corn fed animals. It has been quite the journey so far. At first I only changed Liam's diet, but it got to difficult giving his sister things he could not have. I decided that we were going to all do it together. Some things have been easier than others, but overall it is going well.

This is Liam's journey, but also our families journey. I am hoping this blog can help other families out there dealing with this disease. I hope I can be support to other moms, dads, grandparents or just anyone who has a child living with this disease. Maybe some of the things I do with Liam can help others and help them to get their UC under control. Liam has had only one other "flare up" since his first big one. He was put on only 5mg of prednisone for two weeks. The specialist was extremely pleased and impressed he got off it so quickly. She thinks the change in diet may have helped. Only time will tell, but so far so good!

5 comments:

OH MY GOSH Katie!!! I'm so impressed with you and your sweet son!!! I cannot imagine what you all have been through, but can definitely relate to going on a limited diet for the sake of seeing your baby happy! BIG hugs to you as you continue such a difficult sacrifice and plan, although I know it's easy when you put it in perspective of who it's for!!! I'm so impressed and I'm thrilled your son is doing so well! Looking forward to keeping up with you this way! Hugs, Jennifer Landgraf (Laudin)

Jennifer thank you for such kind words. Us mamas do what we can for our kiddos. The sacrifice is a no-brainer as you know. Do you go dairy free and soy free while breastfeeding? I can give you lots of great tips if I know what area to concentrate on.

I am just so amazed by what mothers will do for our kids! I couldn't imagine having to go through this and still have the energy to blog about it but it is so true on the whole the food we eat affects our health! We are trying to go organic (and grow our own when we can) and nitrate free. It is so hard to find stuff sometimes but I know it makes a huge difference in migraines and other health issues so it is worth the extra time and effort! I enjoy reading up on you guys and look forward to more!

Katie, I just wanted to let you know how much I admire your strength and determination through all of this. You are doing an amazing job of teaching Liam to deal with his condition as he grows up, and you are teaching him even more about the power of a mother's love. You, Mike and Savannah have provided Liam with a circle of comfort and support, and you, Katie, have provided him with wings of courage and the gift of possibility. I wish you only the best as you continue on this journey of research, both for the betterment of Liam's life, but also for the many others who may be helped along the way that are challenged by this disease.